Do a Pubmed search after talking to your doctorFebruary 25, 2017 10:41 AMSubscribe

For all the truly wondrous developments of modern medicine—imaging technologies that enable precision surgery, routine organ transplants, care that transforms premature infants into perfectly healthy kids, and remarkable chemotherapy treatments, to name a few—it is distressingly ordinary for patients to get treatments that research has shown are ineffective or even dangerous. Sometimes doctors simply haven’t kept up with the science. Other times doctors know the state of play perfectly well but continue to deliver these treatments because it’s profitable—or even because they’re popular and patients demand them. Some procedures are implemented based on studies that did not prove whether they really worked in the first place. Others were initially supported by evidence but then were contradicted by better evidence, and yet these procedures have remained the standards of care for years, or decades.

That isn’t likely to change any time soon. The 21st Century Cures Act—a rare bipartisan bill, pushed by more than 1,400 lobbyists and signed into law in December—lowers evidentiary standards for new uses of drugs and for marketing and approval of some medical devices. Furthermore, last month President Donald Trump scolded the FDA for what he characterized as withholding drugs from dying patients. He promised to slash regulations “big league. … It could even be up to 80 percent” of current FDA regulations, he said. To that end, one of the president’s top candidates to head the FDA, tech investor Jim O’Neill, has openly advocated for drugs to be approved before they’re shown to work. “Let people start using them at their own risk,” O’Neill has argued.

I hate this blame-the-victim "patients are too demanding" crap when, just like with police brutality, etc. the real problem is calcified medical culture.

Topol described “what appears to be an irresistible temptation among some invasive cardiologists” to place a stent any time they see a narrowed artery, evidence from thousands of patients in randomized trials be damned. Stenting is what scientists call “bio-plausible”—intuition suggests it should work. It’s just that the human body is a little more Book of Job and a little less household plumbing: Humans didn’t invent it, it’s really complicated, and people often have remarkably little insight into cause and effect.

The reality is that if you're a patient and you're not questioning everything the doctors are doing then you're gonna be subjected to crap that doesn't work and is irrelevant to your actual problem. Sorry if you don't like that, doctors, but you're punching a clock and we're trying to save our own lives.posted by bleep at 11:00 AM on February 25 [22 favorites]

Just get a second and third opinion. Doing that saved my stepfather from getting an unnecessary esophagectomy. Also, if you can, go to major medical centers and avoid provincial doctors looking to "establish themselves."posted by grumpybear69 at 11:07 AM on February 25 [3 favorites]

Being a young woman with weird, rare, or poorly understood medical issues (or all three!) is an excellent way to learn that doctors are frequently full of shit. I guess the silver lining is that I learned that lesson early.

But yeah. Learn enough stats to figure out which papers are bullshit. Read papers. And don't trust your doctor to give a shit or be competent.

Some of the examples in this article are truly egregious, and no doubt we should be holding doctors to high standards, particularly where the evidence is very clear. However, to push back a bit, I think the majority of the time it's more complicated than some of the examples in this article suggest. By all means, search PubMed regarding your care, but also understand that:

1) Evidence-based practice is really super complicated. It is not as simple as "look up the most recent RCT and then decide on the best course of action." We rely on doctor's advice because they are supposed to combine clinical research with their own experience and professional opinion. Why? Because evidence is always changing, is usually mixed, is of varying quality, and is based on populations, not individual outcomes.

2) Medicine is not as advanced as most people think it is, there is much less certainty than most people think, and there are far fewer hard-and-fast 'best practices' than a lot of people think. There is a reason people get second opinions, and there's a reason they're called opinions. This isn't necessarily indicative of some major failing of the medical community, or even of your doctor. We are constantly trying to improve medicine because we know a lot of what we do is wrong. That's how it works. You will get healthcare in your life that will be considered terrible and outrageous care in 100 years. I also like to remind people of the trend of super-radical mastectomies that were popular until sort of recently. It made sense, and doctors were trying to save lives. It took a long time to really have a clear view of its lack of efficacy.

3) Understanding research is really really hard and there's a reason people devote their life to it. Searching pubmed and reading some abstracts is a terrible way to understand your own health situation, particularly if you aren't savvy when it comes to statistics and methods, especially these days when the publish or perish culture has led to, frankly, a lot of dubious research. There's a reason there are a lot of efforts to try and improve how clinical trials are reported. Sometimes things look like they work but when you get into the stats weeds you realize the study was under powered or even over powered, or there was statistical significance but not clinical significance.

Certainly hold your doctors accountable, but don't pretend that medical school and a lifetime of experience means less than your google search. We have a lot of problems in modern medicine, particularly in this country. But we've also come a long, long way.posted by Lutoslawski at 11:14 AM on February 25 [75 favorites]

My title there was a bit tongue in cheek Lutoslawski. I don't think the article seriously suggests that Pubmed searches are a good alternative to good medical advice - but it points out that there is a significant problem with the way many conditions are being treated right now. Personally, however, I always do double check what doctors tell me with my own research - and I feel that I have enough academic training and statistical knowledge to draw reasonable conclusions. Many patients probably don't fall in that boat, which is of course precisely the problem.posted by peacheater at 11:21 AM on February 25 [7 favorites]

Came in here to say what Lutoslawski said. As someone who does scientific research, many times different niche areas get split up into different camps and people who do research in that niche develop an understanding of how that might inform a study coming out of one lab or another. Which is not to discount the validity of science and scientific research at all, only to underline the fact that things are way more complicated than you might expect.posted by schroedinger at 12:21 PM on February 25 [4 favorites]

In my experience professionals in science and medicine suffer from gatekeeper complex; regardless of the correctness of this article, applying a bit of the same ideas from social analysis of power (like translating the dynamic of mansplaining to "sciences planning") makes their rationalizations immediately transparent.posted by polymodus at 1:01 PM on February 25 [2 favorites]

In my teens and 20s I had a dermatologist I used to go to for certain acne treatments (mostly to get the more stubborn zits injected) because he wasn't as busy as my primary and every time, without fail, he would try to get me to drop my conventional treatments (which "clearly" weren't working well) and sign up for some clinical trial that he was involved in.

And every time he would admit that even presuming the trial medication was effective and safe, the odds of me of getting a therapeutically effective dose (as vs. a placebo or underdose) were not favorable, and so the odds of a better outcome vs. the conventional treatment were also poor, and that he was directly compensated for referrals.

It's not always that kind of situation, but I do feel sorry for people who get suckered by those sorts of tactics.posted by snuffleupagus at 1:12 PM on February 25 [2 favorites]

OK. So where do we look to find what evidence-based medicine currently recommends?posted by leotrotsky at 1:32 PM on February 25 [1 favorite]

Even so, that is a distressingly high bar, especially for people who are already sick.

Aaaaand there's the rub. Drumming up the strength to demand a second opinion while doubled up in pain in an out-of-state emergency room with a doctor proposing major surgery without any testing at all, just on a hunch, is still something I consider a major accomplishment.posted by The Underpants Monster at 2:03 PM on February 25 [9 favorites]

Keep in mind this legislation was also supported by patient groups. There are plenty of people suffering from life-threatening or rare illnesses who have lobbied for this sort of thing to allow quicker access to new drugs. When it comes to clinical research, there is always a tension between the people who are actively suffering and want new treatments now and the people who want to be absolutely sure new treatments are safe and 100% effective.posted by schroedinger at 2:12 PM on February 25 [2 favorites]

Even so, that is a distressingly high bar, especially for people who are already sick.
posted by schadenfrau at 2:07 PM on February 25 [6 favorites +] [!]

In my teens and 20s I had a dermatologist I used to go to for certain acne treatments (mostly to get the more stubborn zits injected) because he wasn't as busy as my primary and every time, without fail, he would try to get me to drop my conventional treatments (which "clearly" weren't working well) and sign up for some clinical trial that he was involved in.

You don't even need the competing incentives to run into trouble. I got placed on tetracycline for a couple of years and my doctor told me to get as much sun as possible. What could go wrong? Well rashes, skin cancer, and cataracts for starters but there was no internet back then so you only find out how lucky or unlucky you were well after the fact (the only side effect I got was yellowed teeth which ain't great but it also isn't awful).posted by srboisvert at 2:33 PM on February 25 [1 favorite]

If you're not a clinician and want vetted, reliable medical information, I'd recommend MedlinePlus, like PubMed a product of the National Library of Medicine, but with info for laypeople.posted by Halloween Jack at 3:50 PM on February 25 [6 favorites]

In my experience professionals in science and medicine suffer from gatekeeper complex

I think can be certainly true, but as a rubric I think it does a disservice to many working in medicine. My experience with my lymphocytic colitis - a relatively unusual diagnosis, more so in my demographic - has been that most medical staff (with one slight exception), have been open-minded when I talk about articles in journals I have read etc. They've readily acknowledged that I may well know a lot about this one condition compared to their far more broad experience.

In an age of "Dr Google", I can't imagine the nonsense they get subjected to every day; their open-mindedness always amazes me. I try to couch my thoughts as just that, and only reference real stuff, but I've hardly ever had push back.posted by smoke at 5:42 PM on February 25 [1 favorite]

Living in the US, I find the UK NHS Choices site helpful when someone in the family has a medical issue and we need some perspective on what to do. The NHS isn't perfect, but the incentives of a single payer system seem to run against over-treatment like we experience here.posted by sockshaveholes at 5:54 PM on February 25 [4 favorites]

Even remedies that work extraordinarily well can be less impressive when viewed via NNT. Antibiotics for a sinus infection will resolve symptoms faster in one of 15 people who get them, while one in eight will experience side effects.

I thought that for some infections antibiotics were given not so much as a cure, but to prevent bacteria from spreading somewhere much more dangerous, like the brain or blood?

Doctors have failed me a lot. My guts are messed up from inappropriate NSAIDs that I took on doctor's orders. It was before the internet was hugely popular so I wasn't able to easily look up their side effects. Years later the Celebrex scandal made the news and I put two and two together. These days I don't care if doctors hate it when someone says, "I read on the Internet...."

Being a young woman with weird, rare, or poorly understood medical issues (or all three!) is an excellent way to learn that doctors are frequently full of shit. I guess the silver lining is that I learned that lesson early.

I'm going to recommend Cochrane Library as the next step between the excellent NHS Choices and directly reading the papers. It's basically a volunteer organisation that does secondary literature reviews of current medical practices for medical staff and gives advice on what has good, weak or opposing evidence. Enormously helpful to me when I've had surgery proposed or new conditions, and they list sources so you can go and read the original research.posted by dorothyisunderwood at 6:04 PM on February 25 [5 favorites]

Or if you're in Canada, it means waiting. (And waiting. And waiting... for six minutes of time, the outcome of which is decided in a tenth of the first. On what, who knows, guessing makes me angry. It's not what I'm saying. IME, there's no point in reading a single abstract or even WebMD, because there's just no way to get it across to someone who doesn't want to hear it. You take what you get, or prepare to wait some more. A couple of issues I've got have taken three+ years to even get apprehended. Three+ years and lots of waiting rooms.)posted by cotton dress sock at 9:39 PM on February 25

This was recommended by The Incidental Economist blog. NNT (Number Needed to Treat) is a rough measure of how many patients are needed to be treated to have an effect on one patient.posted by BobtheThief at 3:04 AM on February 26 [1 favorite]

Freakonomics Radio recently did a three-part series in this vein, Bad Medicine (Part 1 here). To points made above, research shows that the further out from med school and residency your doctor gets, the less likely their recommended course of treatment is going to be supported by evidence. There's a lot of "gut" in treatment but sometimes that "gut" is just plain wrong (not just stents but things like estrogen replacement therapy to reduce the likelihood of heart disease in post-menopausal women, which actually increased the likelihood of heart attack in those women).posted by devinemissk at 6:36 AM on February 26 [1 favorite]

My experience with my lymphocytic colitis - a relatively unusual diagnosis, more so in my demographic - has been that most medical staff (with one slight exception), have been open-minded when I talk about articles in journals I have read etc. They've readily acknowledged that I may well know a lot about this one condition compared to their far more broad experience

Lemme guess: you're a man.

Seriously, this stuff is different for women. The longer I deal with this the more it seems like the very reason various nervous system disorders* like fibro etc are poorly understood is because it's women who by and large present with them. Why bother to think too hard when it's just a woman being crazy, right?

And yet a disregulated nervous system is a BFD. Insights into how messed up nervous systems work could help us figure out how to treat trauma of all kinds more effectively.

That's not even getting into the experiences I've had with a rare genetic endocrine disorder that makes me a lot more likely to stroke out. There's nothing quite like being in emergency care having to fight a male doctor because you know your potassium has crashed and you're in acute danger, and then having him get *angry* at you for being right.

More than once.

I really can't stress this enough: if you are female, you have to be prepared to fight for medical care. It is one of the most egregious forms of the Woman Tax I've experienced. I can't even fucking imagine what it's like for women of color.

*im not even getting into the correct designation of what they should be, because that is a very related but large can of worms IMEposted by schadenfrau at 7:20 AM on February 26 [17 favorites]

I really can't stress this enough: if you are female, you have to be prepared to fight for medical care.

And a lot of people don't believe me when I say this, but I've been given more than one pregnancy test in the ER even after I've told the nurse that I know I can't be pregnant because I've had a hysterectomy. Big old scar and everything. I guess the tests must be cheap enough that the insurance company doesn't mind paying for them after they paid for the hysterectomy.posted by The Underpants Monster at 7:36 AM on February 26 [8 favorites]

When it comes to clinical research, there is always a tension between the people who are actively suffering and want new treatments now and the people who want to be absolutely sure new treatments are safe and 100% effective.

Well....wanting simple effectiveness demonstrated is not just a matter of fastidiousness or gatekeeping. Take a look at the "Emperor of All Maladies" documentary and check out the enormous protest effort women engaged in to get very-high-dose chemo approved as a treatment for breast cancer...which turned out to offer no real benefit and to cause significantly increased harm to patients. (Similarly, if you look at images of the early ACT-UP protests, you will see many signs advocating for the approval of treatments that turned out to be worthless.) New treatments don't automatically start from the baseline of "no less harmful than the current standard of care." Just because the desperate patient community wants a treatment approved doesn't actually mean it works.

On the other hand, I consider myself extremely fortunate to have generally had doctors who have been receptive to discussing my understanding of my various medical issues with me, without dismissiveness or defensiveness. But I've had to fire doctors before, which requires willpower and energy better devoted to getting better! It's a real problem.posted by praemunire at 4:21 PM on February 26 [2 favorites]

Well....wanting simple effectiveness demonstrated is not just a matter of fastidiousness or gatekeeping.

If my statement came off like a dig against researchers then it was not meant to. I think in general we could use more fastidiousness, not less. But the dual pressures of profit and/or patient desperation gets drugs introduced that are just not proven. I think it's especially difficult in the case of terminal patients, because it's easy for both patient and doctor to say "what's the worst that could happen?" and demand ultimately useless treatments.posted by schroedinger at 4:33 PM on February 26

oh that's where the bill which failed, thank god, here, to lower medical evidence standards in the UK came from. Thank god, because it's stupid and dangerous. It's a way of feeding on people's hopes and fears to empty their bank accounts. People like that are borderline evil, i think (the 'garlic cures aids' ones really are.) View due to suffering they take advantage ofposted by maiamaia at 6:44 AM on February 27

NB this is one of the reasons i support an NHS the most: (not the stupid half-privatised cut into sectors competitive one the Tories have torn ours into now, the original one): there's just one aim, and everything is about being sure of that aim and achieving it, the most effective healthcare, nothing else. Being a doctor used to be until recently in Britain seen as a vocation like a priest's, that's how doctors spoke of it. Now it's just about getting rich, like everywhere else. I feel like a prophet from the past saying that, trying to tell people who can't even believe this could be true, much less have actually been the case for decades in real life everywhere (here), 'there is an alternative, it really existed, we could have this again'posted by maiamaia at 6:49 AM on February 27 [2 favorites]

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